Category: Living Life to the Fullest

Two Years.

On By tomstroopsIn Alpha Lima Sierra, ALS, ALS Caregiving, Living Life to the Fullest, Loss, Widow, Widow and Dating2 Comments

How has he been gone two years? It is something I have been asking myself alot as today has approached. It feels like I just gave him the last kiss I would ever give him while alive and it feels as if our lips have not touched in such a long time. The pain from his loss at two years feels different. My life in the two years since losing Tom looks different.

When Tom was first diagnosed, I thought, “how will I live without him?”  When Tom died, I had the same thought, but it was not so much a question but a fear of mine. Honestly, how would I? I had been with Tom since I was 19 years old. When he died, I was 52. My adult life only knew him. My adult life was shaped by our relationship. After the shock of his death, and yes, even knowing he would die from a terminal disease, I was still shocked. I think it had to do with how hard he fought to be with us. How even in respiratory failure or sepsis he bounced back, as if he willed himself to stay with us. So, when the disease got to the point he was riding the edge of locking-in, no longer able to communicate in a way that provided him with his definition of quality of life, and we knew it was time to follow his wishes, and remove life support, it was still a shock. Even now, two years later, I catch myself thinking, “how are you not here Tom?”

Does that question occupy my thoughts all the time? I will always grieve the loss of Tom. I now see that as time moves forward, my grief is not as intense. The thought of him doesn’t always bring me to my knees. Don’t get me wrong, there are moments when I can’t breathe, or I can’t see beyond the pain of his loss but those moments are not all consuming as they once were.  So how am I doing at two years? Well, I can tell you that the sharp edges of grief have softened. In fact, about 6 months  ago or so I noticed that I was transitioning from deep grief to healing. I consciously gave myself two years to grieve Tom. I know, I know, you can’t put a time frame on grieving, but I did put a time frame on me to try and work through not just the grief, but the trauma caregiving left me with. I hate to break it to you, but caring for a loved one is hard. Watching someone you love lose their physical and mental abilities is torture. I would be his caregiver all over again, because that is how much I loved him, but by no means did I always do it with a joyful heart. With a sad heart, yes. With an exhausted heart, absolutely. It has taken two years to work through some of those feelings. I know I am not done healing, but I am on the right track. I think that is the other thing I can say about being here at the two-year anniversary of Tom’s death, I am on my own path, and I am now at peace with it. It has not been easy to get here. I sat with my grief. I talked to it and worked through the fears and uncertainty grief can bring.

One of my fears was related to who I was without Tom in my life. I was always Tom’s wife, but who am I as just Lara. Well, I can tell you I am not the same person before ALS or even during ALS. I have found that I like being quiet and sitting with myself. I find if I don’t find time for mindfulness I have more anxiety. I kind of think this is due to the chaos that was ALS. The daily visits from clinicians, the anxiety of needing to be all things to Tom. Like when he needed to be suctioned. If he was still in distress after suctioning, trying every little step from breathing treatment, deep suction, using straight saline to work a mucus plug out to even giving him oxygen through his ventilator. These things may have only taken a few minutes to work through, but I felt as if they took years off my life and further broke my soul. Knowing I was the person he was counting on to breathe is an extraordinary responsibility. When you are in the middle of that, you just do it, it’s what is needed, but now I can look back and see the true cost caregiving took on me as I cared for someone with ALS that was paralyzed, trached and vented. That is what I mean by trauma. That is what I when mean when I say, I crave peace and quiet and allowing myself to be mindful.

At two years since Tom has died, I have completely remodeled the house. Our bedroom no longer looks like a hospital room, it no longer feels that way either. All the common living areas have been repainted. In my living room I have added a built-in unit and my kitchen, well it is completely different. I have been working to change the vibe of the house. I need peace and calm and that is what I have been working towards with the remodel. The house, while still our house, has slowly started to feel more like my house. The “we” mentality is giving way to more of a “me” mentality. I know it will take more than two years to really understand who I am without Tom, but I am learning and part of that meant changing the house to suit my needs.

At two years since Tom has died, I have added adventure to my life. Since March, I have been on the go. Some of the things I have done include a road trip to El Paso from Austin where I got to see the McDonald Observatory, spend time in Fort Davis, Marfa and even stay in a bubble tent in Terlingua. I have done a weekend in Wimberley, spent lazy days walking in Fredricksburg and heading to Waco with Trey to see the Dr. Pepper Museum and the Texas Ranger Museum. I have been camping at a city park and did Boonedocking on the beach in Port Aransas. I got to use my passport this year when I spent 3 weeks in Spain and Italy and had an amazing adventure in Washington D.C. for a trip that was supposed to be just 5 days that turned to 11 days. Upcoming adventures include a trip to Belize in September, possibly a cruise to Mexico in October as well as weeklong adventure to Costa Rica in November. I have even made hotel reservations for a quick visit to D.C. again in early December. Who knows what little adventures await the rest of the time.  I am taking the approach that I want to live a life of adventure, to make Tom proud of me. To show him that I am living life again, something he expressed to me many times.

At two years since Tom has died, I have found a special someone to spend my time with. Someone who understand my journey as it is his journey too. He understands not only losing a spouse but losing a spouse to ALS. He understands the toll caregiving can take. He too understands the desire to live life fully, to live the life your spouse was cheated out of.  He also understands and has experienced becoming a different, more authentic version of yourself after such a hard journey. Finding yourself connecting to someone other than your spouse is strange. Lots of open and honest conversations regarding the feeling of “cheating” have taken place. We help each other understand and navigate this new, strange world we must live in. We laugh and cry, we have adventures and are also happy just sitting quietly. He makes me happy, which is something I wasn’t sure would happen again as it related to a having a relationship. This is what Tom wanted for me. It is part of what he meant by wanting me to live life fully. We had the difficult conversation about me finding someone, either as a companion or something more. I would also shake my head and say, “no, not sure I can do that”, but he would counter with,” it’s okay if you do. I want you to be happy.”

At two years since Tom has died, life looks different. I am surviving and each day I get better at living as a “me”. When Tom first died, I didn’t know how I would live without him or if I wanted to, but two years after his death, I am learning how to live without him physically. I carry Tom in my heart now and his words do ring out occasionally to guide me. I have found not only will I survive this new, strange chapter of my life, I want this chapter to be a life lived fully!

All my love,

Lara

Remodel or Teardown?

On By tomstroopsIn Alpha Lima Sierra, ALS, ALS Caregiving, Living Life to the Fullest, Loss, Widow, Widow and DatingLeave a comment
house renovation
Photo by Rene Asmussen on Pexels.com

This past year I have been remodeling the house to take it from fully accessible to more aging in place with my style added. Well, not really style but vibe. That is how I have styled my home, with a peaceful, calm vibe. It was needed after years of living in the chaos that ALS brought to our lives and home. 

Like the house, I have been under construction but my changes required a full tear down approach. That is because there is nothing to remodel when you are shattered and broken. That is what Tom’s death did to me. My foundation was so shaken that I crumbled under the weight of the grief his death brought me. It took me months to realize that the repairs to my heart and soul would take a tear down and full rebuild to repair the damage the ALS journey and his death caused. This is what a terminal disease looks like for the family on the other side, the beyond. 

Building myself back up has taken time, but brick by brick it is happening. I credit all the things I have done to date to get me to this point. Taking time and allowing myself to feel every emotion, to fully grieve my husband was necessary. It was hard, man, was it hard, but I did it and continue to do it. Feeling all the emotions allowed me to fully tap into who I was as scary as that is and who I wanted to be.  The hot-tub mindfulness, meditation and yoga have allowed me to sit with myself, learn to love myself and be comfortable in the pain and in doing so I found my version of peace and happiness. I found talking with other widows/widowers helped as well in not just normalizing the crazy things I was feeling and thinking but confirming that these feelings and thoughts were not just mine but that others felt the same. It removed the isolation and loneliness that grieving can cause. All of the things I was doing  allowed me to see the world in a different way. To see that I could continue to build myself up so I can have a future I could possibly look forward to living.  That’s a big statement right there folks. When Tom first died, I couldn’t see a happy future for myself and to be honest, didn’t even want to think about being happy again. How could I find happiness when Tom was gone? As the intense grief subsided and I started to see myself healing, being happy again was something I thought was actually possible and yes, I did want it. 

I am finding in this grief journey, the more I let go, the more abundant my life becomes.  Letting go of the intense grief or the guilt surrounding me moving forward with my life and Tom dying. I am reconnecting with friends, making new friends, finding hobbies and activities I like and shocker, I have even begun dating. I wasn’t looking to date just yet, but what started out as connecting with an ALS widower to get through the 2nd year holidays has transitioned into a friendship and now companionship or as I have been saying, my special friend/friendship.  There is a deep level of understanding and mutual respect for what we went through and what we are going through as we navigate life moving forward. I don’t think I would even be able to allow myself to feel happy if I had not done the work and taken the time to rebuild myself into the person I am today. Am I fully restored? Nah, but my foundation is solid as is the framework of this new me. Just like the house remodel,  I am different. There is no way around that but like I talked about in a previous post, this version of me is more authentic. I am more confident in myself and what I want for my future and like the remodel, my vibe is so different than it was before Tom died. 

As the home remodel is coming to a close, I have wondered what Tom would think. Would he like the new look and new vibe of the house? The same goes for me, what would he think of this version of me? I think he would most definitely be proud of who I have become and the path I am on with my healing. He would be happy that I can now honestly say that I am finding happiness in this beyond life of mine. What would he think of the remodel, well he would most definitely tell me there are too many girly touches, but if it makes me happy, he is happy. 

So whether you are a teardown or a remodel, take the time to do the work, understand the journey and the effort and cost in rebuilding is worth every minute and every dime!

All my love,

Lara

Rewriting the story I tell myself

On By tomstroopsIn Alpha Lima Sierra, ALS Caregiving, Living Life to the Fullest, WidowLeave a comment
person holding hardcover book with blank cover
Photo by Monstera Production on Pexels.com

That’s right. I am writing a new story I tell myself or at least trying really hard. Today, I turn 54 years young. While this number may have been one that I dreaded pre ALS, it is one that I now embrace, even with it marking a very important time in my life. The importance of turning 54 is that Tom was cheated out of this age by ALS. He died at 53. Tom was older than me by 17 months. Last year, we were the same age and this year I am older than him. My 46 birthday also marked the day we heard the words ALS. I celebrated my 49th birthday in the hospital with Tom, just less than a week after his trach surgery in 2019.

I am not going to lie, it takes a lot of healing and self reflection to change and believe a new story, but that is exactly what I am doing. If I continue to live with the the memories surrounding my birthday or any significant day, without acknowledging it, understanding it and not getting sucked in to the sad parts of it, I will never grow. Never heal. Never learn to accept what has happened. Accepting does not mean forgetting or being okay that something bad has happened. Accepting means processing it, and learning from it and finding gratitude with my new life that the event created.

Today, my story is that I am embracing the fact that I get the chance to turn 54. I got to wake up and experience a new day. Being grateful for being alive and having the opportunity to create a new life for myself. That is how I honor Tom. Not by sitting in my grief till it swallows me whole, but by allowing it to be a reminder that life, love, happiness and peace are so very precious.

So here’s to my new story, I am 54 and I am have so much gratitude for making another trip around the sun.

All my love,

Lara

On By tomstroopsIn Alpha Lima Sierra, ALS, ALS Caregiving, Living Life to the Fullest, Loss, Widow1 Comment

Peace. Hope. Happiness. All feelings that have seemed incredibly foreign to me for a long time. I have spent the time since Tom’s passing searching for them. I know there have been quite a few blog posts and definitely some episodes in mine and Mary’s podcast ALS Caregivers and Beyond about this topic. This morning, I caught a glimpse and felt peace, hope and happiness. It was in the most unexpected place, in my backyard just outside my bedroom door.

I need to give you a little back story for you to fully get the epiphany I had. Tom has always wanted a hot tub, but it was always in the conversation that began with, “One day…” When Tom was diagnosed with ALS our “one day” statements stopped and we began to make them happen. So, one day, we bought a hot tub. I saw it as Tom’s hot tub. He loved it. He climbed into it any chance he could and would spend time just soaking in it listening to his music. Then he became paralyzed, trached and vented. His hot tub days were over and for the most part, so were mine. Instead of ensuring the chemicals were good or the temperature was just right to use, I checked these things periodically because I had to. When Tom died, I hated that hot tub. I have told Trey so many times, that we just needed to drain it and get rid of it.

So now that you are caught up on my hate/hate relationship with the hot tub we can proceed with the story. So, I was chatting with a friend who really likes their hot tub. Like, in it most mornings and sometimes early enough to see the sunrise. They said it was relaxing. So, since I am on a quest to find relaxing things to do in hopes that the elusive peace and happiness I have been searching for will find me, I got in the hot tub Christmas morning. While it was warm and felt nice, and possibly helped me do something that was not my normal on such a traditional day, I didn’t really find peace and happiness. But, this morning I awoke at the ungodly hour of 4:45 am. I know, I have no idea why either probably has something to do with the sick joke the universe plays on people that are getting older. While I did lay in bed just wishing to go back to sleep, I pondered if I should jump in the hot tub. I of course talked myself out of it a few more minutes because it was too dark…creepy critters hang out in the dark. It was also too cold. I mean who wants to go run outside in a bathing suite at that time of the morning and with the temperature around 33 F. Too early and too damn cold. So, I got up, put my bathing suit on, grabbed my portable speaker and phone and headed to the hot tub. I found that before I could get in, I needed to add water because the tub was making a weird sloshing/sucking sound which meant, add some water. So as I grumbled to myself that this was bullshit, it was cold and too early I went and grabbed the water hose to add some water. After what seemed like I was standing in the cold forever, I had enough water. As I ever so gracefully climbed in, so those that know me should have probably laughed a bit, because I am far from graceful, the warmth of the water started to settle the frustration I had been dealing with regarding the early hour, the cold, the not enough water, etc.

In the dark, quiet of the early morning combined with the warmth of the water, my mind started to settle. I could feel myself relax. Something I never really stopped to really pay attention to was the feeling of sitting in a hot tub in the cold. I get it now. I listened to some soothing piano music, and not just watched but felt the day begin. The tree’s that earlier had just seemed like flat silhouettes on a painting came to life as the sun came up. The quiet of the early morning changed as I heard the birds starting to sing to greet the new day. My friend Mary would say that I was being mindful. That I was living in the moment. I was. I also found that while I was aware of the day beginning I was also aware of thoughts floating in and out of my head. I was, what I now understand, had been doing my own morning meditation. Which is completely strange as I have only been ever able to do guided meditation, but this was not that. This was something altogether different. Today, in the wee hours of the morning and for the first time in a very, very long time, I felt peace and gratitude. Not just peace about losing Tom, but it was this overarching peace about my life-my past, my present and my future. I felt gratitude for being able to experience the beauty that happens when the day begins. For so long, I have felt the need to be on-guard. To be ready for anything. To handle any situation. To. Be. In. Control. The feeling of needing to be “on guard” didn’t seem to have as much power this morning. I felt like I could be me, the old Lara, the Lara that didn’t know ALS and the often unbearable heartache of losing the love of your life. I know I share a great deal with you in this blog, but keep in mind, I share what I want. I have never shared the really raw, hard stuff the things that often take me to my knees and would probably compel you to call in a welfare check on me.

This morning, I remembered it was okay to be vulnerable. Not in a powerless way, but in a way that allows me to feel and be in the moment. In a way that I see I need to be in order to heal. The version of me that is the person Tom loved. Someone who felt safe enough to be honest and vulnerable with him. In my healing, I am working on creating that same space for myself. This morning was truly transformative for me. I learned I needed to meet peace in the middle. I have to do the hard work for peace and happiness to find me. Who knew, that the real journey to finding them would be just outside my door should I choose to wake up at the butt crack of dawn and brave the cold to find them. The reality is that today is a good day. Tomorrow, I may not open that door and let the morning come without me witnessing it, but that is okay. It’s my journey!

Story Time-Our Wedding Day

On By tomstroopsIn Alpha Lima Sierra, Living Life to the Fullest2 Comments

The Big He and I get to celebrate our anniversary for two days. I know, you are asking yourself, how is that possible. Well, 31 years ago, we eloped on the island of Guam, which is a day ahead of the US. Guam was the Big He’s first Duty Station. We had planned for me to visit for the summer of 1990 and would marry later in the year. Well, as with any good love story between two very young kids, fate had us marry earlier than we thought.

A few days after my last college final in May 1990, I was on a plane to visit the Big He on the island of Guam. I had a return ticket for the first part of August. I would have two whole months, sixty consecutive days to be with him. By this point in our relationship we may have had a total of 45 days we were physically together and keep in mind they were not consecutive.  Let me just say, I had the best time with him on the island. I was, for the first time in my life, off on my own-okay I was with the Big He but it still counts. I was on a tropical island with the most gorgeous man AND he was in a uniform. Who knew I had a thing for smart-ass and uniforms. In mid-July, the Big He was preparing to go off island for an exercise. He would be gone for 30 days. We had only two choices for what I could do. I could go home early or stay. So, we got married July 30th, 1990 which was about one year after we went on our first date. I was twenty years old and he was twenty-one. I had no job and only 2 years of college under my belt. He was just an Airman First Class and on the day we married, he had negative $80 in the bank. He had bounced a check for a microwave of all things. Of course a bounced check could not stop love!

You would think finding out you were negative $80.00 would be the worst thing that could happen on your wedding day…it wasn’t. You ready? Here is the story…

We had arranged for two friends of the Big He to come with us to be witnesses and also because one of them had a vehicle to get us to the Justice of the Peace (JP). There was actually five people in the vehicle that went that day. At the JP’s office, we did have to wait a litte bit. In those minutes before our time to get hitched, my stomach was a ball of nerves. The Big He and I could barely look at each other. I knew I wanted to get married, but man was I scared. Standing in front of the JP and looking into the beautiful green eye’s of my future husband, the best I could mumble when asked if “I take him to be my…” was not “I do” but “Yea”. WTH??? Such a romantic and traditional way to express my desire to cheris this man for richer or poorer or in sickness and in health. The look on his face…he has yet to let me live that down.

After the ceremony, which there are zero pictures, we headed to McDonalds because everyone was hungry. Remember I said the Big He had bounced a check…yep no money to eat. After McDonalds we headed back to Base. On our way back, we were pulled over because the driver was speeding. After getting a ticket, we took off once again towards Base. About a mile down the road, we had blowout. Not a big deal until we realized there wasn’t a spare. The blowout occured on a back road to Base and in the middle of no-where. There was however a small house on the edge of the boonies or jungle line. I was voluntold to go knock on the door and ask to call the Law Enforcement Desk. Oh, hey, did I mention that all the people in the truck were cops but I was the one that was supposed to knock on a stranger’s door for help. One of our brave USAF LE’s did come with me and the LE Desk would be sending a patrol car to come get us and sending a tow truck as well.

As we waited in typical tropical island weather, we had on again, off again rain events. Y’all know I have naturally curly hair right? It does not do well in hot, rainy, humid weather. The tow truck was the first to arrive. My new husband and our friend Daryl, my man-of-honor, jumped in the truck and off they went to Base. Yes, if you are asking yourself, did she say new husband left with Daryl, that would be correct. I was left alone on the side of the road with two people, none of which were not my new husband! The two LE’s decided it was probably a good idea to start walking back to Base in hopes the patrol car would get to us soon. Yep, that didn’t work out very good. The patrol went out the wrong gate which took him around the island before he caught up with us…only a few miles from Base at this point.

Once back on Base, we were dropped off at the dorms, where my new husband was waiting for me, freshly showered and I swear he took a nap cause he look rested. Me on the other hand, had wild crazy curly hair, sweaty and my pretty white heals were worn flat from walking on the road which had a coral base to it. Once I freshened up, we went to have a wedding dinner at the NCO club…cause we had no money and he knew if he took me to the Mac T I would kill him. The only thing left that late in the evening was steak, potatoe and salad. They also had a few slices of cheesecake for dessert so that was our meal. One we have eaten every year since. Steak, potatoe, salad and cheesecake for dessert.

The day wasn’t picture perfect but that is not really what a marriage is about is it? It’s about the people. We actually laughed most of the day and night about what had transpired. The Big he and I have always found reason’s to laugh. We just love being with each other and truly enjoy each other’s company.

Since it is already July 30th in Guam, I am taking the opportunity to wish my beloved a Happy Anniversary. Love you more!

All my love,

The She